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#1 of 38 Old 08-22-2008, 12:07 AM - Thread Starter
 
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I'm not really new... I've been on MDC and have posted here and there for the past few years. But due to some recent circumstances, I'm "hiding" my identity with a new username. I hope you'll forgive me, I know that seems shady... hopefully you'll understand...

I'm a 26 year old mother of two little girls, married to the most amazing man. And lo and behold, I was recently diagnosed with HIV. Before you assume anything about me, let me clear some things up. I'm not a drug user, I'm not a whore, I'm really not a bad person. (It's taken a long time to convince myself of that, but I'm pretty sure it's true.) I was married once, and after my divorce, I went through a crappy time in my life that involved a couple of one night stands with guys I knew, and assumed were alright. Apparently one of them wasn't, and so here I am.

It's been emotional hell. We found out when my youngest was two months old - after a drug and test free pregnancy and a picture-perfect home birth. We were trying to up my life insurance policy, and they required a blood test, and that's how we found out. The baby has tested negative, as has my husband, and my older daughter was born before it was an issue. I'm the only one, so far, that's positive.

However, we've opted to continue breastfeeding, at least up until now. Statistics show (and I've studied them carefully) that the risk of transmission via breastfeeding is extremely low, in fact it's actually 0% up until 6 months, and not much higher up to 12 months. Now that baby is 12 months, we're working on weaning. It's been a hard decision to make - breastfeeding is so important, and that immune boost is utterly important for her in this situation especially. My husband is entirely supportive, and actually encouraged me to keep nursing when I wasn't really sure. I'm at a point now though where I feel she's gotten the immune benefit she needs, and it's time to stop to protect her own health.

HIV isn't the death sentence it was once made out to be - people live long, relatively normal lives now. HIV isn't even considered a 'fatal illness' anymore - they're calling it 'chronic illness' instead. Not that that makes me feel much better. It's a struggle to get through each day without tears, even nearly a year after my diagnosis. It's hard to be a great mother to my two girls because I'm so burdened by my own troubles, but I try every day, and succeed fairly well most of the time.

The other little "issue" for us is that we don't really believe in using modern medicine. We don't vaccinate, don't attend well-child check-ups, don't use antibiotics, and in general, don't see doctors. We believe firmly in true health - eating a diet of whole, raw foods to naturally take care of one's immune system. That's being put to the ultimate test now, I'd say! I'm not great at it - I know I should eat healthier, stop doing some unhealthy things (like an occasional drink, cigarette, or my daily coffee habit.) I suppose I ought to check in at the Eating Healthy board. We're doing all we can to avoid my having to take the medications they prescribe for HIV, which include prophylactic antibiotics (read: antibiotics ALL the time, permanently) and anti-retroviral medications that are more potent than chemotherapy, and are intended to be taken for life. We actually have entirely alternative views on HIV itself, and whether it really even is all that they say it is. (There's actually an entire Mothering issue on that subject, from several years ago.)

I belong to an online "support group" message board, but it's so mainstream I often feel out of place. They all know what it's like to have HIV, but they're all firm believers that the medical profession is going to save them, and all they have to do is take those drug "cocktails" every day (which will likely make them die of liver failure long before they'd otherwise die of AIDS.)

I guess the reason I'm finally "coming out" here is that I need the support of people who think a little differently, that don't just assume that just because most of society believes something doesn't make it true. I know most of you (probably NONE of you - I've come to realize my situation is pretty darn rare, especially with my beliefs!) have ever been in this particular circumstance, so I figured I wouldn't bother telling anyone. But I need some support, and I need some encouragement and understanding, and I can't think of a better place to get it than here.

If you made it this far, thanks for reading. I didn't intend for it to get so long, but I guess I kind of had a lot to say. I hope you'll understand now why I'm doing this "incognito" for now. I'm just not ready to "come out" to the real world. But I promise I'm not some creepy fat naked guy on the other end of your computer.


Edited to add: my old username has been deleted. I'm legal now. So sorry, again, for the trouble I caused, I had no idea it would be the problem it turned out to be.
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#2 of 38 Old 08-22-2008, 12:15 AM
 
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to you. Welcome back.
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#3 of 38 Old 08-22-2008, 12:29 AM
 
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Welcome mama

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#4 of 38 Old 08-22-2008, 01:14 AM
 
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Welcome (back), Mama!

Have you looked into enzyme therapy at all?

Best of luck to you on your journey back to good health!

:
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#5 of 38 Old 08-22-2008, 01:31 AM - Thread Starter
 
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Thanks so much for the link! I'll certainly look more into it. And thanks to all for the welcomes. I was so terrified to finally tell the truth, even if it is in hiding.
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#6 of 38 Old 08-22-2008, 03:03 AM
 
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Thank you for sharing your story. Sounds like you are doing an amazing job mothering your little ones during a difficult time.

lucky mom to Oliver, 8/6/07, and Finn, 11/28/10, and wife to DH
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#7 of 38 Old 08-22-2008, 01:43 PM
 
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Welcome back, mama You are very strong and very brave, imho. Thank you for sharing your story. I'm glad you came here for support, as you know MDC is a great place to find that and filled w/ many wonderful, amazing souls.

I hope to get to know you better and wish you all the best. :
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#8 of 38 Old 08-22-2008, 01:48 PM
 
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I am : for you.

Mama to 9 so far:Mother of Joey (20), Dominick (13), Abigail (11), Angelo (8), Mylee (6), Delainey (3), Colton (2) and Baby 8 and Baby 9 coming sometime in July 2013.   If evolution were true, mothers would have three arms!

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#9 of 38 Old 08-22-2008, 01:56 PM
 
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I just saw something on the news the other day about research they are doing that would essentially result in an HIV vaccine...not that it's perfect of course (they think it's still about 10yrs out) but it uses a mild virus that breaks down the HIV cells and bolsters the immune system or something...it all made sense when they explained it but now I forget.
Anyway, I'm also a big believer in wholistic health via nutrition etc, but I do think there is a time and a place for some exceptions. So by all means do what you feel is best, but be willing to take things one day at a time, and if a time comes when you feel you should do something mainstream, don't be afraid to take that step too.
to you. I'm sorry you have to go undercover like this. I hope you are able to feel better about that soon.

~Jenni, rural frugal Alaskan, eternally married to Dragon
loving my wild things DS Wolf (12), 3 angels, DS Bear (6) & DS Eagle (3)
 

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#10 of 38 Old 08-22-2008, 04:27 PM
 
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Welcome back! I do not have HIV, but I do have alternative views about HIV, which are probably the same (or similar to yours) and I'd love to chat about that topic sometime. Let me know if you'd like to.

I'm sure you'll find the support you need here!!
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#11 of 38 Old 08-22-2008, 04:33 PM
 
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Learning & growing & changing everyday!
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#12 of 38 Old 08-22-2008, 07:26 PM
 
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Welcome "back" to MDC!


Any misspellings or grammatical errors in the above statement are intentional;
they are placed there for the amusement of those who like to point them out.
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#13 of 38 Old 08-22-2008, 07:35 PM
 
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Welcome back. I couldn't read and not post. Hoping you find the support you need to ensure a long healthy life with your family. Thanks for coming and out and telling your story. It is inspiring.
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#14 of 38 Old 08-23-2008, 02:36 AM
 
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Lemon juice said it best..you really are inspiring. MDC is such an incredible place for support!! These boards are the only place that I can "be me" and speak my mind of everything that is occuring in it. I hope these boards do the same for you!! Back!! I'm glad your here!! :

33 Year Old w/ a on the way w/ my DH. EDD 4/6/2011. Mama to Lotus Olivia 7/17/09 and fur mom to 1 and 1
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#15 of 38 Old 08-23-2008, 12:03 PM - Thread Starter
 
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Thanks again for all the welcomes and acceptance, it means a ton.

Can anyone tell me how I can delete my old username? I got a PM earlier saying what I've done is against the rules, and I have to figure out how to go about fixing it so I'm "legal". They offered me the option of a temporary "guest account" to get information I need, but I'm pretty much ready to be permanently anonymous, at least until I'm more comfortable with my "status". So yeah, any suggestions on fixing this? I don't want to be a criminal, but I really need the support I've found here while I deal with this.

My greatest fear is being "found out" by people I know in real life, some of whom post here, and know me. I'm just not ready for that yet.
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#16 of 38 Old 08-26-2008, 03:42 AM
 
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Welcome back mama!


Kirsten, mama to Monkey since May 2007 and Bean born 11/7/09
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#17 of 38 Old 08-28-2008, 06:34 PM
 
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Welcome.
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#18 of 38 Old 08-28-2008, 07:24 PM
 
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Welcome back, glad you can find a way to post where you feel safe. A friend of mine has a partner who is HIV+ and he's been doing really well for years. I wish you all the best.
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#19 of 38 Old 08-28-2008, 07:40 PM
 
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much love to you mama. good luck on your journey.
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#20 of 38 Old 08-28-2008, 07:42 PM
 
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HUGS to you Mamma! The thing is that this could've happened to so so many women. How many ladies have had a night or two that should have been more protected, right? Hello college! So, again hugs and try not to let the guilt get you. NO guilt! Props to you for mothering your girls and being strong for them.

J+B = Little G (1/08) and baby S (1/10)
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#21 of 38 Old 08-28-2008, 07:47 PM
 
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I can only imagine how hard this all has been for you. I hope that you find some of what you need here.

I would think that a mod could help delete the old account.

May I ask a question? Did you have alternative views on HIV prior to finding out your status? Or did your research about your status lead to your alternative views?

Again, I hope you find a great deal of support at MDC.
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#22 of 38 Old 08-28-2008, 07:59 PM - Thread Starter
 
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Quote:
Originally Posted by beka1977 View Post

May I ask a question? Did you have alternative views on HIV prior to finding out your status? Or did your research about your status lead to your alternative views?

.
No, I had no idea there was a whole other side to HIV until after I found out. I just figured HIV means you'll get AIDS and die. Talk about devastation.

When I got home from the clinic and soon realized I couldn't even *feed my baby girl anymore, I started doing some research. The first thing I came across were some articles published in Mothering back in like 99 or 2000 about whether HIV was even really what they thought it was, whether it was really a transmittable disease, etc.

I'm still not sure entirely how I feel. There are two defined sides of the fence, and yet still I sit atop it. But I don't think HIV has to mean AIDS and it certainly doesn't mean death.

I've lost a lot from it already though. We'd always planned on having 5 or 6 kids. Unfortunately, unless I want to put my future babies on 12 weeks of carcinogenic "antiretroviral therapy", I can't have more kids. It's just not something we'd consider. So I'm grieving the loss of those babies I've always dreamed of, and it's a struggle for me, especially with Littlest One getting so big so fast. I've also lost the right to nurse, and that one is currently causing me tons of grief, as I wean Littlest One much sooner than either of us was ready for. When we first found out, and I did the research and found out that the actual transmission rate is practically nothing, and chose to continue breastfeeding, we faced child services showing up at our door threatening to take away our daughter because we were "endangering her life". That's about the time we chose to stop seeing any doctors - I'm not going to put up with them threatening my rights as a mother just because my views are different from theirs.

Thanks to the person who said "it could happen to anyone". I need people to say that... to realize that. "HIV" is synonymous with dirty, filthy miscreants. Most people assume since they're pretty "clean", it won't happen to them. And then I fear they'll see me as that stereotypical "dirty" person, though you'd never think it just to look at me. It's terrifying, the thought that someday people that I know in real life could find out, and what they'd think of me. So your comment meant a lot. :-)
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#23 of 38 Old 08-28-2008, 08:19 PM
 
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I am glad you stayed at MDC.

Mom to '97, '07, '09 and birth mom '00 and wife to my BFF
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#24 of 38 Old 08-29-2008, 06:19 AM
 
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I have to applaud you on your sincerity [I dont mean for that to sound patronising] You must be going through an extremely difficult time in your life and your postiveness and humility are an inspiration..I dont think I could cope!

I wish you all the best in life and I hope your health remains good until you are very old!
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#25 of 38 Old 08-29-2008, 09:24 AM
 
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Welcome back!

PM a mod about how to delete your old account--Irishmommy's in this thread, so she's my pick.

I'm so glad you've told your story here--that took a LOT of guts. :
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#26 of 38 Old 08-29-2008, 10:29 AM
 
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back, mama. and much strength to you! Thanks so much for sharing your story.

I'm a morning person.  We actually do exist.
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#27 of 38 Old 08-29-2008, 02:45 PM
 
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Ironically enough, I saw a news story a few weeks back about a couple wanting to have children when one of them was HIV positive. They decided to do IVF in order to conceive bc there is some way of cleaning the sperm to make sure it doesn't have the virus and the mother should have a low viral level. Honestly, it struck me as rather odd since most IVF clinics won't even give dwarf couples a dwarf child bc they consider it not to be a 'perfect' embryo. I wasn't aware of the fact that movies like "Gattaca" were already happening in real life.

I just personally think that if you really want more children, then there is no need for you to grieve the loss of them when you have the opportunity to still have them and know that they healthy If you want more children then you have just as much right as anyone else to have more.

You could even adopt if you really didn't want to risk anything and still have more children. Who better to adopt a child with HIV than a loving mother who also has it? I don't know if adoption is an option for you not; it just would be a way for you to have more children without being concerned about any sort of transmission.

I hope you are still doing well and going strong, both for family but more so for yourself. You can't very well take care of someone else without taking care of yourself first, and you definitely seem to be doing that by asking for some support

I'm sorry to hear you are having to deal with a virus that carries such a stigma in the mainstream world. It's really not fair, but at least you have found a place like this where people won't judge you. And you are so right! HIV is not a death sentence and it most certainly does not make you a whore. Congrats on being so incredibly strong!!

On a side note, I do have links to the articles about the IVF if you are interested. I didn't put them on here bc it may not be for you and they all seem to do the whole 'moral question' bull and quite frankly, I don't think you or anyone else in your position needs to hear that crap. Some are written in a somewhat friendly matter that doesn't seem to harsh, but some people are just out right mean. I can send you some of the nicer links if you wish, or you could just google it.

Good luck in everything you do. And stay strong! You are a woman and you are a mother - you can do anything! :

Me with my baby girl Maeleigh (Oct 08) and My (step) baby girl Whren (May 05) in Heaven with her mommy .. And introducing our little JuneBug (June 10) We heard the !!!
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#28 of 38 Old 08-29-2008, 11:36 PM - Thread Starter
 
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Thanks so much for your caring replies!

IVF isn't so much an issue... DH isn't afraid of contracting HIV, which is the only reason IVF would be needed. I guess we kind of figure if he hasn't gotten it yet, he probably wouldn't in the few times we'd have unprotected sex to make a baby. (There is a fascinating study done on heterosexual, monogamous couples with one HIV+ partner. Amazingly, out of those that chose not to use condoms, not one partner contracted the disease over the course of like 10 years or something. But they say HIV is a sexually transmitted disease...)

HIV+ women are having babies all the time now. Our concern lies with the drugs required to do so. No one really knows how safe they are, and I'm the kind of mama who refuses all drugs during pregnancy. That limits our options - either have a "healthy" baby with their drugs, or go underground with an unassisted homebirth and risk transmission (if HIV can really even be transmitted that way, or at all.)

Adoption is a possibility, but a complicated one, for a lot of reasons. But it's one we're considering.

I'm learning fast though that mainstream medical folk don't take too kindly to "sick" people who refuse their drugs. I'm afraid to even go have basic viral load counts done and such now, because of the threat that they could invade my rights as a mother. They seem to have forgotten about us for now, and the last thing I want to do is remind them, so I'll do without medical care. (There is one clinic for our entire half of the state. I don't have many options.)

It's such a hugely multi-faceted situation to be in. It's kind of unheard of - mostly because most mothers like me stay in hiding.
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#29 of 38 Old 08-30-2008, 12:00 AM
 
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Welcome mama
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#30 of 38 Old 09-05-2008, 05:53 PM
 
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Welcome, Mama. And I second that HIV can happen to anyone. I do agree with another poster that mainstream medicine isn't always a bad thing, and you may be surprised at the compassion and help you'll get if you go to the right place. You'll be in my thoughts and prayers. Good luck to you, and I hope you have more children that you want.
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